Choosing hospice care

Hospice care puts you and your loved ones in the care of experts on the end of life. The goal of hospice care is to help patients to live their last days as alert and pain-free as possible. Hospice care aims to manage symptoms so that a person's last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than quantity of life. It provides family-centered care, involving the patient and family in all decisions.

This care is planned to cover 24 hours a day and 7 days a week. Hospice care can be given in the patient's home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States is given in the home, with family members or friends serving as the main hands-on caregivers. If a patient wants home hospice care, a caregiver must be in the home with them 24 hours a day.

Hospice care is used when you can no longer be helped by curative treatment, and you are expected to live about 6 months or less if the illness runs its usual course. You, your family, and your doctor decide together when hospice services should begin. If you get better or your cancer goes into remission, you can be discharged from the hospice program and return to active cancer treatment if you wish. You can go back to hospice care at a later time if needed.

Making the choice to get hospice care should not be viewed as a last resort. You and your family can get unique and valuable help from hospice care. Through hospice care you will get the help you may need to put your affairs in order, say your good-byes, and spiritually prepare for your death in a way that promotes dignity and comfort. Your family will be fully supported through the dying process and helped through grief and bereavement after your death.

What makes me able to get hospice care?

Even though it is known that a person must have 6 months or less to live to enter hospice, other criteria are also used to decide if a person with cancer is eligible for hospice. In most cases, you must have widespread, aggressive, or progressive disease as seen by increasing symptoms, worsening lab values, and/or evidence of metastasis (the spread of cancer cells to distant areas of the body). You must also be unable to work or do certain things for yourself. Finally, you must have either refused life-prolonging therapy or have been getting worse in spite of treatment. You, your family, and your doctor decide together when hospice care should begin. Home hospice care is covered by most health plans, Medicare, and even Medicaid in some states. (See the section, "Who pays for hospice care?")

Who gives hospice care and what do they do?

There are things about hospice care that make it different from other health care. Hospice care focuses on palliative care. Palliative care is treatment to relieve physical and psychological symptoms. It focuses on comfort and well-being. Hospice staff members are specially trained to help you and your loved ones through this very difficult time. The knowledge and experience they can share with you can help you to have the very best quality of life right up until the very end.

A team of professionals

Hospice care uses a health care team of doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers to care for you and your family. Each team member offers support based on their special areas of expertise. Together, they give you complete palliative care (treatment that relieves symptoms, but is not expected to cure the disease). Their goal is to improve your quality of life by relieving symptoms and giving social, emotional, and spiritual support to you and your loved ones.

Pain and symptom control

The goal of pain and symptom control is to keep you as comfortable as possible to allow you to stay in control of and enjoy your life. This means that side effects, discomfort, and pain are managed to make sure that you are as free of pain and symptoms as possible, yet still alert enough to enjoy the people around you and make important decisions.

Spiritual care

Hospice care also tends to the spiritual needs you and your family may have. Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your specific needs. It may include helping you to look at what death means to you, helping you say good-bye, or helping with a certain religious ceremony or ritual.

Home care and inpatient care

Although hospice care can be centered in the home, you may need to be admitted to a hospital, extended-care facility, or an inpatient hospice facility. The hospice can arrange for inpatient care and will stay involved in your care and with your family. You can go back to in-home care when you and your family are ready.

Respite care

While you are in hospice, your family and caregivers may need some time away. Hospice care may offer them a break called respite care, which is often given in up to 5-day periods. During this time you will be cared for either in a hospice facility or in beds that are set aside for this in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you are cared for in an inpatient setting.

Family conferences

Through regularly scheduled family conferences, often led by the hospice nurse or social worker, family members can stay informed about your condition and what to expect. Family conferences also give you all a chance to share feelings, talk about what to expect and what is needed, and learn about death and the process of dying. Family members often find great support and stress relief through family conferences. Conferences may also be done informally on a daily basis as the nurse or nursing assistant talks with you and your caregivers during their routine visits.

Bereavement care

Bereavement is the time of mourning after a loss. The hospice care team works with surviving loved ones to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or letter contact, as well as through support groups. The hospice team can refer family members and care-giving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient's death. To learn more on this topic, please see our documents, Coping With the Loss of a Loved One, and Helping Children When a Family Member Has Cancer: When a Child Has Lost a Parent.

Volunteers

Hospice volunteers play an important role in planning and giving hospice care in the United States. Volunteers may be health professionals or lay people who provide services that range from hands-on care to working in the hospice office or fundraising.

Staff support

Hospice care staff members are kind and caring. They communicate well, are good listeners, and are interested in working with families who are coping with a life-threatening illness. They are usually specially trained in the unique issues surrounding death and dying. Yet because the work can be emotionally draining, it is very important that support is available to help the staff with their own grief and stress. Ongoing education about the dying process is also an important part of staff support.

Coordination of care

The hospice team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. You and your caregivers are encouraged to contact your hospice team if you are having a problem, any time of the day or night. There is always someone on call to help you with whatever may arise. Hospice care assures you and your family that you are not alone and help can be reached at any time.

How do I find hospice care?

Finding the hospice program that meets your needs may take some research, but it will be time well spent. It is important that you and your family do this while you have the strength and ability to take part in the decision. Quality of care, availability of needed services, the types of services covered, staff training and expertise, and insurance coverage all need to be considered. Most communities have a more than one hospice provider you can choose from. Ask around about others' experiences with hospices. Other resources are listed at the end of this document but here are some other ways to start your search:

Local resources

Your doctor or hospital discharge planner can help you find hospices in your area. Hospice care providers also are listed in the phone book. Your community may have information and referral services available through your local American Cancer Society, an Agency on Aging, a local United Way chapter, the Visiting Nurse Association, or your place of worship.

State resources

You may contact your state's hospice organization or its department of health or social services to get a list of licensed agencies. The state health department oversees certification of hospice services. Certification makes them able to get funding from Medicare and, in some states, also from Medicaid. Check the blue pages of your phone book for other resources in your area.

National resources

National organizations that deal with hospice care accreditation, treatment, and patient advocacy are listed in the "To learn more" section at the end of this document. Some of them can also tell you which hospices are near you.

Who pays for hospice care?

Home hospice care usually costs less than care in hospitals, nursing homes, or other institutional settings. This is because less high-cost technology is used and family and friends provide most of the care at home.

Medicare, Medicaid in most states, the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations may pay for hospice care. Along with this, community contributions, memorial donations, and foundation gifts allow many hospices to give free services to patients who can't afford payment. Some programs charge patients according to their ability to pay.

Medicare

To get payment from Medicare, the agency must be approved by Medicare to provide hospice services.

To qualify for the Medicare hospice benefit, a doctor and the hospice medical director (also a doctor) must certify that the patient has less than 6 months to live if the disease runs its normal course. The doctor must re-certify the patient at the beginning of each benefit period (2 periods of 90 days each, then an unlimited number of 60-day periods). The patient signs a statement that says he or she understands the nature of the illness and of hospice care, and that he or she wants to be admitted to hospice. By signing the statement, the patient declines Medicare Part A and chooses the Medicare hospice benefit for all care related to his or her cancer. The patient can still receive Medicare benefits for other illnesses. A family member may sign the statement if the patient is unable to do so.

Medicaid

In 1986, laws were passed to allow states to develop coverage for hospice programs. Most states have a Medicaid hospice benefit, which is patterned after the Medicare hospice benefit.

Private insurance

Most private insurance companies include hospice care as a benefit. Be sure to ask about your insurance coverage, not only for hospice, but also for home care.

Private pay

If insurance coverage is not available or is not enough to cover all costs, the patient and the family can hire hospice providers and pay for services out of pocket. Some hospices are able to provide services without charge if a patient has limited or no financial resources.